Sunny gets mad at me because I assume all of the children will die. She likes to remind me that there must be some like us, grave but no fatal cases. I concede that she has a point.
SUNNY WAXES PHILOSOPHICAL
Sunny smokes weed for her fibromyalgia. Which, doctors say, is fine. What isn’t fine is the fact that she likes to share it with her friends, though we figure that I am an exception, since I have my own kind of chronic pain thing going on.
“It doesn’t even help with the achiness,” she tells me, sucking on a joint and shaking her head. “It just dulls it a little.”
“Isn’t that the same thing?” I ask. She pauses, considering how best to explain herself.
“No, I don’t think it is. I guess with sharp pain, the immediacy helps, but with dull pain, it’s always there and you know it isn’t going away anytime soon.” Sunny is smart like that. At Temple, she’s majoring in child psychology, hoping one day to be the kind of therapist that helps kids get through their pain by playing music. I see her surrounded by a circle of damaged children playing tambourines—in my mind, she is smiling faintly, as though she were afraid to smile for real.
“I never thought about it like that,” I tell her. “I guess dull pain is as good as it’s ever going to get for us, which makes dealing with it even worse.” When I take the joint from her, ignoring the shooting pain radiating up my arm, I try to suck in the smoke the same way that she does
“Not to be depressing,” I add.
Sunny shakes her head. “It’s fine. I started it. And besides, you’re always depressing.”
Sunny stubs the half-smoked joint out on a bench and puts it in the canister she carries around in her pocket. “I think you and I should start a punk band called The Dull Aches,” she says. Sunny is a good musician and owns nine guitars—whenever someone gives her bad news, her parents buy her another one.
“I don’t play any instruments and I can barely move my fingers,” I reply.
“So it’ll be in the Seattle girl-band grunge tradition. That way we don’t need any musical talent. Or a bass player. It’ll just be you singing and me playing guitar.”
This seems to me like a not-so-bad thing to fantasize about, though I can’t sing for shit.
Sunny is twenty-one and I am twenty-two, though we are still cared for in the pediatric wing of the hospital—her for fibromyalgia and me for the kind of juvenile arthritis that attacks with a vengeance at the onset of puberty and then gets progressively worse until its bearer shrivels up and dies. With conditions like ours (i.e. the kinds that aren’t going to improve), doctors say it’s best to postpone the inevitable matriculation to the adult hospital, where we’ll have to familiarize ourselves with a new set of doctors who haven’t been treating us for the last 10+ years. So we stay at the Children’s Hospital of Philadelphia (referred to as CHOP by those in the know) and watch younger kids get sicker and healthier and then sicker again. The nature of the place is cyclical in the depressing sort of unchangeable way, which can really bum you out if you’re paying attention.
Today, we are here to see the same pain specialist—Sunny and her mom picked me up on their way, which was nice because I got to avoid the bus. We like to book adjacent appointments with doctors so that we can carpool and hangout, which is a sad ass way to socialize but we take what we can get.
Sunny and I are occupying our usual spot in the waiting room underneath the mural of bears carrying multicolored balloons. She’s up first and when the doctor calls her in, I take my book out of my bag and read a few pages. Another girl comes in with her mother— I can tell she’s in that short-lived early stage in her chemo treatment where her hair is already thin but hasn’t yet started to fall out in a big, obvious way. Before she looks like a holocaust survivor, or a skinhead. I smile at them, wondering whether or not the mother is at all prepared.
Sunny gets mad at me because I assume all of the children will die. She likes to remind me that there must be some like us, grave but not fatal cases. I concede that she has a point. Some are like us: enrolled in college but too sick for life in the dorms. They’ll find themselves spending their early twenties stuck in a never-ending loop between home, school, and doctor’s appointments where they’re forced to sit in a waiting room and stare at murals of knock-off Care Bears. There, I tell Sunny. Optimism. Are you happy?
In group, the psychologist once informed me that my attitude was bitter and acidic. I told her that she was being repetitive and redundant but Sunny shot me a look, so I backed off. The psychologist continued unfazed, saying that when we let ourselves be bitter, it’s like pouring acid in our wounds and expecting them to heal. It was meant to be a lecture on the powers of positive thinking, but since it was given by a healthy person with shiny hair and a Kate Spade bag and probably a bunch of other things to be positive about, the moral didn’t really stick.
MARK RUFFALO, BEARER OF BAD NEWS
The pain specialist that Sunny and I are here to see looks like Mark Ruffalo if for a living Mark Ruffalo told kids that they were either going to die or be in pain for the rest of their lives. His salt and pepper beard is mostly salt and his eyes look watery and sad. When I ask him how he’s doing, he blinks twice and then smiles a bit.
“I’m hanging in there,” he tells me. After a beat, he asks how I’m doing.
“Same for me.” It strikes me as odd that he would admit to a patient that he’s merely hanging in there, but I guess I appreciate his honesty.
His hands are large and hairy and I watch him struggle to put on medium sized gloves, the only ones left in the boxes mounted to the door. I wonder if Sunny noticed the wedding ring tan he has on his finger. I bet she did. Maybe he wasn’t wearing it for a while because of something dumb, like it was being resized or cleaned or engraved, or maybe he didn’t have it on for a sadder reason that I didn’t want to know about. He’d have to have taken a serious ring hiatus to get a tan like that.
“How’s the pain management been going?” he asks. I tell him that it’s better than it was before, though I’m still missing a lot of class.
“I don’t know. I usually have to take the bus to campus and the cold weather makes the pain a lot worse. Something tells me that Intro to Psychology isn’t worth it.”
He looks at his chart and makes a note and while I know he has no recourse against my admission that I’m not in the running for perfect attendance, I wish I could take my remark back, tell him that I faithfully attend every class that I’m blessed enough to be enrolled in.
“So, is it that you’re in too much pain or that you just don’t like your classes?” The way he says this comes off as judgmental and I rethink my budding fantasy that he’s Mark Ruffalo’s hot and sweaty gardener character in The Kids Are Alright. Besides, if I stick with that fantasy, that makes me the sad sack lesbian character played by Julianne Moore.
“It’s the pain,” I say, trying not to sound defensive. “I mean, the classes suck but the reason I don’t go is because it doesn’t seem worth exacerbating every ache in my body. You know?”
Mark Ruffalo suggests steroids to help with the swelling in my joints, though I hate taking them because they make my cheeks puff out and cause me to gain weight. I ask if there’s anything else we can try first and to justify my reluctance, give an explanation of the side effects, which he sits through pretty patiently given the fact that he’s perfectly aware of what steroids do to people. When I’m finished, he wipes his watery eyes and tells me that no, there aren’t any other options that will have the same alleviating effect, that steroids are really the best thing for me right now. Though it isn’t the first time they’ve been suggested, it is the first time in a long time that I agree to give them a shot, which tells you about the kind of pain I was in. Before I leave, he calls in a prescription to the pharmacy near my house and makes me promise to make another appointment if my situation doesn’t improve.
“I hope you feel better,” I tell him. This is a ridiculous thing for a patient to say, a kind of obscene role reversal, but to his credit, he doesn’t pretend not to know what I’m talking about.
“Yeah,” he says, taking off the gloves and throwing them in the trash. Then he looks at me and smiles a bit. “I have no idea why I put these gloves on. All I did was ask you a few questions and write a prescription.” He seems untethered in a discomfiting way, something you don’t want to see in your doctor. I gather my bag and coat, unable to think of anything else to say.
In the waiting room, the girl and her mother are gone, leaving behind a Highlights magazine opened to an incorrectly-completed maze. I wonder if the girl has a brain tumor. Sunny would say that she is probably just bad at mazes.
Outside, Sunny’s mom pulls the car up to the door so that we can avoid walking in the lightly falling snow.
“Did you see the doctor’s wedding ring tan?” Sunny asks me.
“Yeah! I knew you’d notice. He must’ve gone somewhere tropical over Christmas.” I consider telling Sunny about our odd goodbye, the way he didn’t even try to deny that he was off in some way, but decide to keep it to myself.
“He must’ve gone without his wife,” Sunny says.
“And definitely without the ring.” I raise my eyebrows suggestively, and Sunny rolls her eyes and looks out the window.
“I thought he was cute,” Sunny’s mom says. Sunny sighs and puts her head back against the headrest. I wonder if she isn’t feeling well or if she’s just annoyed that her mother had the audacity to comment on the attractiveness of the pain specialist. Usually, Sunny’s mom doesn’t talk when she drives us, which lets me and Sunny pretend that we’re the only two people in the car. Sunny can’t drive because she gets these blinding headaches that come on really fast. I could drive if I wanted, but my mom doesn’t want me to. She says if another bad thing happened to me, it would kill her.
GUILT AS BACKGROUND NOISE
There was something in the fertility medicine they had her take. When she tells the story, which she does only when she drinks too much, the doctor sits her down and gives her a choice: give up on having kids or try this last-ditch attempt at coaxing her eggs out of hiding. My mom chooses the latter, and in the story, we are meant to infer that anyone in their right mind would have trusted the doctor and gone through with the treatment. She also strongly implies that she did it to make my dad stick around—an attempt at fixing a broken marriage that was as unsuccessful as it was ill-advised.
Ten years after the desperate would-be mothers started taking the miracle drug, their children were diagnosed with juvenile arthritis.
“What would you have done?” she’d ask our dinner guests while opening another bottle of wine that nobody wanted. This was back when I was still in high school and we still had dinner parties. The guests would answer with vague and then excuse themselves from the table. They had a long drive home and it was getting late.
“Okay,” my mom would say, clearly fuming. “Drive safe.”
Now, my mom cooks dinner every night: a protein, a vegetable, and then something fatty and comforting, maybe a potato dish that we both end up eating way too much of. I can hear her humming nervously as I read in bed, this sort of tuneless humming that constitutes the background to everything she does.
Since she always cooks, I always do the dishes, even though the repetitive scrubbing motions hurt my wrists.
DELAYED ADOLESCENCE PART II
It’s painful and draining being sick, and my body looks like a small child’s. It’s unfair to blame this only on the arthritis, as most of the women in my family are small and flat-chested, but I really believe that when joints are met with enough resistance, they stop striving to grow. Sunny is small and slight but doesn’t look childish at all. She has that manga girl look to her, big soulful eyes, like you could tell her anything and she’d listen and nod and if the information you told her was sad, her little bow mouth would even quiver. Men love her and though she claims she has no interest, I can tell she collects them, these suitors who track her down at the grocery store and the hospital and the gas station. Like without them, her life would truly be nothing. It would be my life.
I believe Sunny avoids actually taking advantage of these men because she isn’t sure what her body is capable of and doesn’t want to put it to the test. Once you know what is possible and impossible, it gets harder to fantasize.
“Did you know that orgasms relieve cramping?” I ask her this as we are searching through the clearance rack at Forever 21 one day. “They actually relieve all different kinds of pain.” I look to see if Sunny is listening, but she is looking intently at the price tag on a pizza themed t-shirt.
“You’re talking really loudly,” she mutters, still not looking at me.
“This is a store for promiscuous teens, I think it’s fine if we talk about orgasms.” Sunny seems a bit angry but I keep pushing. “Could you imagine if it were that simple?”
“You’re an idiot,” Sunny says, pulling a romper off the rack.
“Aren’t you curious?” I ask her.
“No,” she says, shaking her head. “Nope.”
MOOD DISORDERS: WHO WANTS ONE?
My mom says that doctors give out mood disorders like candy, sprinkling patients with convenient diagnoses to explain away their feelings. She says that Sunny is part of this phenomenon, having fallen prey to big pharma companies that like to unload their latest creations on the unexpecting ennui-filled consumer. This is why Sunny takes Prozac, according to my mom, because her mother is incapable of saying no to doctors. I used to argue, but now whenever she goes on these rants I just nod and give her a sarcastic thumbs up. Her distrust of medicine isn’t too hard to understand, given what happened.
HOW TO MAKE FRIENDS WITH WHAT YOU’VE GOT
Sunny shares her weed with her friends at Temple, which is something that she had the audacity to tell her primary doctor. It just slipped out, she said, but a part of me wonders if she didn’t tell him to seem more her age, to prove that she could make like the other kids did—a misguided attempt at normalcy that makes me extremely sad. He sent her away with a slap on the wrist but didn’t stop writing the prescription.
Sunny doesn’t want me hanging out with her Temple friends, which would hurt my feelings more if I didn’t understand it so completely. These students, shining beacons of health, might be put off by someone like me, face contorted into the manic chipmunk’s grin that comes with steroid use, unable to walk for more than two blocks without taking a rest and waiting for the throbbing in my joints to subside.
Or maybe I’m being unfair, and these students would accept me with the easy grace and good nature of someone being asked to make a small enough sacrifice, one they’d be glad to make considering Sunny’s generosity with her weed. And besides, the loudest member of the posse, a wavy-haired kid named Daniel who wears thick lenses and is probably a writer or a bassist, is clearly into Sunny. Those types are always drawn to the girls with bags under their eyes.
SURPRISE! NOW DEAL WITH THIS
I met Sunny’s Temple friends for the first time a few months ago, at the surprise party that Sunny’s mom insisted on throwing her. I tried to convince her not to do it, that I could think of nothing Sunny would like less, but her mother insisted, assuming she knew something about Sunny’s secret desires that I (and maybe even Sunny) did not.
When the party was officially greenlighted, I tried to do damage control, which in this case meant keeping Sunny’s school friends out of her room and gently redirecting them to the homemade dip on the living room table.
Sunny wore a hello kitty hoodie with long sleeves and tight grey skinny jeans—I knew she would’ve chosen something different had she known that her friends would see her, but I thought she looked perfectly childish and sexy and wounded in a way that some lucky guy might be able to fix. The party was excruciatingly boring, though her friends were clearly stoned so they didn’t mind sitting around and eating dip while making painstakingly slow conversation with each other. I’m sure Sunny’s house was just a pitstop on their way to some other, more fun party. I watched them carbo load on chips and soda in preparation for a night that I imagined would include heavy drinking in the basement of a frat.
They left around ten, and as he walked out the door, Daniel turned to look at Sunny, his face a simulacrum of a wounded bush animal turning back towards the predator that wounded it. Sunny pretended not to notice and waved to everyone in turn.
When they left, we got under the covers and watch Chopped Junior until her mom offered to give me a ride home.
Even though I know it’s not a good idea or productive in any way, sometimes I google old people with juvenile arthritis, which seems like an oxymoron: the fact that it’s still called ‘juvenile’ when it’s writhing its way through the fingers of an eighty year old. After decades of having this disease, having lived with it for twice as long as the people with the adult onset version, these men and women (mostly women) look like gnarled trees with bulbous branches, rotting with some hard to pronounce tree disease. Their fingers are bent in unnatural directions and their faces are chiseled with pain, all sharp angles.
I’ve seen every photo in this little corner of the internet and I’ve clicked on them so much that all of my targeted advertising is for assisted living facilities or arthritis friendly household appliances that cost about four times as much as their non-friendly counterparts. It makes me sick, looking at these photos, but sometimes it’s the only way I can fall asleep.
DON’T CRY FOR ME, ARGENTINA
None of this is intended to make you feel bad, by the way. My life is not an infomercial meant to draw on your sympathy, tugging at your heartstrings until you reach into your wallet and dictate your credit card information to some bleeding heart who works at a call center for abused dogs.
I could be one of those skinhead children, gaunt from chemotherapy. Or worse, I could be their mothers.
But I’m not.
I turn twenty three tomorrow. I hope this is the year that someone gives me an orgasm so monumentally fantastic and earth shattering that it opens up a chasm inside of me into which all of my pain falls.
I know that isn’t how orgasms work, despite the proliferating scientific studies on the magic of female orgasms that I read when I get tired of looking at old people’s gnarled limbs.
But I don’t know. A girl can dream.